Sunday, May 14, 2006

A year ago, early Mother's Day morning before the kids were up, I was staring at a pregnancy test. I turned it over, to see if there was any other possible interpretation. Nope. Surprise! Happy Mother's Day!!

I went on to Costco (with the considerable help of a friend, because I was either in shock or already in the throes of "morning" sickness) and on the way home, dropped by the hospital with sustenance for the husband. I was grinning at him like a goon, kept kissing him, he asked what was up. I just shook my head, told him I loved him and that I'd see him at home the next day, after his night on call. I wanted to think up some fantastic, creative way of telling him that we were having a baby and it wouldn't be in the patient pick up/drop off zone.

So much for that. When he arrived home the next afternoon, as he was getting ready to drop into bed, I stood across the bed from him, still grinning, and said, "I have something to show you."

He squints, not having slept in about 36 hours. "Is that a pregnancy test?"

"Yup," says I. I turned it over and held it out. "I even checked the back to see if there was any other possible interpretation of the two little lines." I looked up at him. He was grinning. I was blushing.

As I tucked him in, he was still chuckling. Over the next few days, he called a couple of times a day as he was walking from building to building, sometimes just checking in, often telling me that he couldn't wipe the silly grin off his face. Sweet man. We joked about how funny it was that I was pregnant, since he was home so little with his hideous internship hours. (He'd had a few days of vacation in April, however. Ha.)

I felt rather in awe of the universe. Not that it wasn't going to be more work than I'd planned to be having, more diapers (now that S was potty trained, darn it), less teaching the bigger kids to snorkel, or taking trips at the drop of a hat. The news of a baby is reason for celebration of God's manifest grace, reason to hope for humanity, renewal, even if it's less "convenient" than one's original plans. These little ones grow very quickly. Even if it feels like eternity in the midst of the spit up, the dirt, the ubiquitous laundry, childrearing years represent under a third of one's life. And, again, what else could I be doing of this enormous consequence? Nothing. (Besides, the skills required to do any portion of motherhood well will almost certainly stave off Alzheimer's. Forever.)

Meanwhile, I was rapidly feeling crummier and crummier. I've never been as sick during pregnancy as I was then. I'd never before taken anything, other than ginger, for pregnancy nausea. This time, I could barely make it through fixing peanut butter sandwiches. The consistency of the bread dough as I was kneading it, even watching it go 'round in the KitchenAid, made my stomach roil. I woke up in the middle of the night feeling pukey. I finally gave in and took Zofran. Oh, sweet pharmaceuticals! I learned all sorts of useful things from this experience. For example, that the more desperately one needs sublingual Zofran, the worse it tastes. Think nuclear marshmallows. Ack. The ginger honey syrup was great (thank you, K) and ice water was my constant companion--I think sipping it nearly around the clock kept my throat just constricted enough, if you know what I mean.

I had a couple of early ultrasounds because the wonderful OB thought at the first one (5 wks) that perhaps the egg sac was empty. For all of my shock at being pregnant with a fifth child, I was briefly in a state of outright panic. On my way to the second appointment, I was thinking, "What if it is empty? Then what?" A small voice in my head said, "It's not, and you know it. Everything will be fine." Hmm. I'm not accustomed to hearing voices...

At about 9 weeks in, I had the oddest visual blips. Not like hallucinations, not actual visions. Just a flash of a picture in my head of knives flying at my belly. All kinds. Paring knives, vegetables peelers, apple corer. I was a little alarmed, but hey, pregnancy is just kooky in general. After about ten days of this, no more. All the while, the wonderful OB (and she was, truly) keeps insisting that I will need an amnio and I'm in the midst of a high risk pregnancy. Bah, I think. I have four perfectly healthy children and had only the smallest of concerns during those pregnancies. And I'm so close to the cut-off for the aged mama business.

On the fourth of July, I took a header off my bike while trying desperately to will K away from the tree she was flying toward on her own bike. Twenty four hours later I was spotting, convinced I was in the midst of a miscarriage. It was a long night. I had "the voice" in my head again. "Protect the baby." I closed my eyes, feeling cool, liquid titanium pouring over us both, a shield from whatever was coming next. I was practicing peeling myself off the ceiling, breathing deeply whilst bedding the kiddoes down. Worrying as I carried S, sleeping, up the stairs. What if I was losing this one? "Protect the baby." I was calmer after the kids were asleep, but I did not sleep well. The next morning, another ultrasound--no sign of placental abruption, heartbeat strong and steady. Relief.

In the midst of the bottom dropping out of life on other fronts, I took other prescription meds for even worse nausea and so I could sleep. Initially, I lost eight pounds in ten days because I couldn't swallow real food. As very kind people poured protein drinks into me, the weight loss turned on a dime. I had a couple of rounds of antibiotics for what turned out to be an infection that could have induced labor at about 17 weeks. Still, lots of reassurances from the professionals that none of this would affect the baby.

At about 19 weeks, I had the usual anatomy ultrasound scheduled. It's a boy! "Wow," I think. G will be so thrilled. E and K had been praying since S appeared to be a girl on her ultrasounds for a baby brother for G. I'd told them they could grow up and have their own boy babies, as I was done having babies. That's the last time I edit my kids' prayers, let me tell ya.

After the ultrasound, I went on to the appointment with the OB. I joked about having turned the weight loss around. She blew right past that. She was intent on the fact that the ultrasound showed some anomalies. She talked about a brain anomaly, but was most worried about abdominal ascites; she'd had to look it up. She put in a call to a specialist. Yes, I would need appointments with perinatologists, more ultrasounds. I felt as if I was ricocheting around in my own head, a feeling I've become more familiar with as the revelations have continued.

The perinatologists were great. The punkin and I had an ultrasound every month, avoided the amniocentesis on the principle that it would not provide more diagnostic information but did carry a small (but real) risk, and then NSTs (non-stress tests) twice a week for most of the last trimester. There was the fetal echocardiogram ultrasound, which also spent a little time on the rest of him, just to check things out. I went flying in to the hospital once with contractions when I was especially worried about the kids. The contractions settled right down as soon as I was hooked up to the monitor, thank God. Later on, the pediatric surgeon was also great, drawing diagrams, talking about everything calmly, but not at all in a patronizing fashion. He mentioned a tubule that was still open from the little guy's belly which could turn out to need surgery, but would likely close on it's own. That was the first I'd heard of that.

It would seem that about the time I was having the "visions" of knives flying at my belly, Q was leaking bile from his still forming liver into his abdomen. Remember the high school chemistry experiments which involve mixing two clear liquids to create a precipitate, like snowflakes in water? The presence of bile in his belly caused something similar--"calcifications" were visible on ultrasound. The manifestation of a substance where it ought not be. While looking always at whether or not he was having further issues in his tiny belly, we were also watching the rear of his brain for "mild ventriculomegaly"--a condition which can mean lots of things, or nothing. It did not appear that he was continuing to leak bile, but the number of calcifications, and the fact that they were so visible continuously, instead of becoming less noticeable as the pregnancy progressed, was noteworthy. As for his brain, the conventional wisdom is that boys tend to have larger ventricles and that slightly enlarged ventricles tend to resolve. In the range of the initial measurements we were seeing, it's hard to know if the numbers truly indicate anything other than perhaps the fact that a different ultrasound tech is viewing the brain on a slightly different plane. Something slightly off straight coronal or sagittal planes would be difficult to replicate and the variability in those measurements could be insignificant. Or not. As it happened, the measurements increased in the later ultrasounds. Not good.

(Added 5/21/06:) In fact, I had asked my OB and at least one of the perinatologists if it was possible for babies to have seizures in utero. I got the oddest looks. There's a definite difference between hiccups, which he was also having, and what I would describe as seizure type activity. The former is a bumping sensation, while the latter is the baby stretching out fully, then relaxing, repeatedly and rhythmically.

Because of the very real possibility that Q would need intervention at birth, I delivered at a hospital nearly an hour away. It's likely that a closer one could have dealt with his needs, but when the pediatric surgeon said, "The people at ___ are very good, and we can always airlift if we need to." Uh-uh. With everything else, I was not about to add the possibility of a helicopter ride for a newborn to the mix. Even if he'd been fine with transport, I'd have been stuck inpatient somewhere else. No way.

When I arrived at the hospital, I was having contractions every two minutes. They stopped. Yup. Stopped. The nice perinatologist who was on that night errs on the side of almost hypervigilant, and decided I'd had enough. Besides, I was dilated past 4cm with my fifth term baby and if they sent me home, it was a pretty sure bet that I wouldn't make it back there to deliver. Not good. So I was admitted. This particular hospital has an OB triage and then, when a mama is admitted in active labor, the RN stays with the laboring mama until the baby is born. If she needs a break, another RN comes in. Awesome arrangement. And awesome nurses. Everyone was great.

Q's heart rate dropped to 75 at the end. The attending had already requested the vacuum as he was watching the monitors even before I started pushing. He and the residents were very busy, I was pushing without contractions, and suddenly, out came the little guy, cord around his neck. His APGARs were 8 and 9 and, for a personal touch, he managed to pee on the NICU team. What a guy--a sense of humor and boundaries and only a few minutes old.

I held him very briefly. He was (and is) so beautiful. There he was, looking around, wrapped up tight. They had to take him quickly to start the contrast and x-rays and ultrasounds and CTs and the IV and other monitoring. He was whisked away and then there was stuff to do. I had to call the kids to tell them their baby brother had arrived. I had to start pumping, since Q was NPO for 48 hrs while they did the contrast studies on his little tum to make sure he could be fed. Then there was the starting with bottles, working up to full feedings, getting him to nurse--apparently, when babies are on a dextrose IV, they are pretty sleepy and often have trouble getting the sucking thing down. So he had an NG tube while we worked on his suck/swallow skills.

(Added 5/21/06) At one point, I had asked a NICU nurse about the rhythmic stiffening/relaxing that I was seeing in Q as he was lying in his isolette and feeling as I was holding him. I wondered again about the possibility of seizure activity. She noted it, though she hadn't seen it herself, and suggested that I bring it up to the neonatal doc and residents who were coming through on rounds. As I was asking the doctor about this, Q began what was the longest episode I had observed, perhaps twenty seconds or so. The doctor, standing on the opposite side of the isolette, said, watching, "Eh... I don't think that's seizure activity." Now that I know a little more about types of seizures, I would describe it as myoclonic (which the neurologist did, later), which doesn't look to the general public at all like what we would typically think of as a seizure. Q was simply extending himself fully, fists up on his chest, in an eerily strong flexion, then relaxing, and repeat, repeat, etc. He was not bothered by this at all. It happened mostly in his sleep and he kept right on sleeping.

At the end of Q's stay there, I met the neurologist who we'll be seeing again this week. He's very thorough, takes his sweet time. He spent half an hour explaining to me what we would be doing next regarding the ventriculomegaly. He said that, by itself, the agenesis of the corpus colossum and variation in the ventricles visible on the CT and ultrasound would not worry him too much. Baby brains are plastic and capable of extensively rewiring themselves in order to be functional, even brilliant. But, since Q's head circumference was slight, especially in comparison to the rest of him, he thought we should get an MRI at about 4 months of age. That age is the magic number for risk of anesthesia dropping off considerably. So my instructions were to contact his office at about 4 months, unless the baby's head measurement changed dramatically, roughly 5% up or down, and see the pediatrician more frequently for monitoring.

Q had five days in NICU before I could take him home. The kids came to "help." What a hoot. I think they were just in awe of the little guy. They were so great, and really trying to be helpful, bless them.

The following weeks were uneventful for Q, except for colds, bronchiolitis, pneumonia, which resulted in inhaled steroids and Albuterol treatments, and no sleep for me. At about our second check-up type visit, the pediatrician came in with a chart. She had replotted the measurements from NICU to present and found that his head circumference had dropped from the 17th% at birth to below the fifth. That was the beginning of this blog.

(Added 5/21/06) Interestingly enough, after that first visit with the neurologist in which he took an extensive history for a little guy only weeks old, I came home and googled "in utero seizures" and guess what popped up? Infantile spasms. No wonder the neurologist was so sure that Q was having seizures. It turns out that many mamas whose babies have seizure issues, especially infantile spasms, report having felt seizure like activity prenatally. Whaddya know. And about those odd looks from the professionals? It turns out (according to papers I found online) that report of in utero seizures may have a strong correlation to later diagnosis of seizure disorders, but it's nigh unto impossible to study, so no one does.

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So Q had his MRI on Friday. He sailed through the anesthesia, thank God. They put him under with a tiny little mask in about fifteen seconds, then started the IV. It was so much better than doing it the other way 'round.

The not feeding him part just plain sucked, but he did fairly well even with that. After he was done, the recovery room nurse tried a high glucose Similac bottle with him, which just made him mad. He was so hungry and discombobulated by the anesthesia that it took him a while to be able to nurse, then settle enough to burp and nurse some more. He was a sleepy little dumpling for the rest of the day. He tolerated the meds well, but I think he was still affected even yesterday. His tone was decreased, more like a normal baby younger than he is, but today he was right back to being himself: chatty, happy, "looking" around to find the source of sounds, napping in the morning like he likes to do, and outside later--a favorite place of his.

Friday afternoon, before we were even home, the neuro office called to say that they'd had a cancellation, could I be there on Tuesday this week instead of Wednesday of next week? Yes, yes, yes. Let's not sit on the pins and needles any longer than absolutely necessary.

So this week I must get G's glasses picked up, kids to counseling, Q to neuro and therapy, reschedule his shots, then piano, and it's the gymnastics show Thursday evening. Oh, the kids will be so excited. What a week! I think I'd better get over the feeling that this level of activity is unusually busy, whaddya think? I'm considering how to get the kids involved in a couple more extracurriculars--K in a girls' choir, for example. And I want to get them on to the next batch of history fun. Never a dull moment, eh?

I love this mommy stuff. It confounds me regularly, knocks me to my knees in good and bad ways, leaves me breathless, keeps me on my toes. And it is the biggest blessing I could imagine. Wow. I couldn't have cooked up anything this great.

Kiss your babies an extra time and have a good, joyful, calm, and resilient kind of week. I'll be back with the news from the neurologist.

3 comments:

Yevrah
said...

You forgot the part about the resident checking you and calmly stating 'she's complete and at +2 station' (after you'd sat at 4 for so long). Then the excited flurry of a bazzion people crowding in to cheer you on!

I cried as I read this entry. I was brought back to your birth, and feeling all the emotion again. What an incredible mother and woman you are! What a privilege to have been a small part of this journey.

Your kids are blessed to have you in their lives...and I feel blessed to have met you IRL to help welcome this precious gift of your son.

First time here?

Me

I'm mothering five gorgeous, perfect children, and homeschooling three of them. I am one of the best-blessed mamas in the universe. Oh and -- there's the small matter of neuro issues here. I suspect that somehow the littlest one's Special Needs behave as some sort of condenser that delivers unusual configurations of Rainbows, Butterflies and Bliss, right in the midst of the ubiquitous and itinerant crazy bits. So we have some stories to tell.